Green as…

The topic I am currently workshopping in my head is…”How to not be resentful during a long weekend when everyone else seems to be having more fun”. So far I have…nothing. The title is simply on a loop.

I thought I’d be fine. “We’ll do some fun things…it will be like a holiday at home.”  I’m not so convinced today. Tomorrow we do have plans so there is hope…but today is blah. It was a tough week here so today really needed to be low stress. Nup. The girl is on try-hoisting-me-if-you-like-but-I-will-kick-all-the-way fire. Her brother helper hurt his wrist yesterday so can’t help to lift her. And the oldie is away for what feels like ages. So it’s just me.

This kid is so many good things but man she can be hard work!  My shining light? I do know {{somewhere in the recesses of my mind}} that I am lucky. And that Speechless is on again tonight! Watching a family like ours on TV is good therapy. And here’s where you come in dear friends…hit me with your solutions. How do you care for your family and keep it light and fun when you feel you are constantly missing out? The workshop is still in progress.

The Last First

Do you remember lolling about on long summer days as a kid? You felt like they would last forever. And waiting for your birthday was a torturous countdown of weeks, days then hours. Gran, or some other “oldie”, would remind you that life goes by so quickly but it didn’t ever feel like it would. Then. When life was leisurely. Yesterday I blinked and today my son starts year twelve.

He has already turned eighteen which was tricky to get my head around but this feels even bigger. Once he finishes school it will be different…the end of an era. It’s weird isn’t it? My mum brain {or maybe heart} is clinging to a baby who has been grown for many years. The young man in his place is growing more independent just as he should. But…sigh.

I watched him walk to the station on his last first day feeling proud and a bit sad. Living in this family with the girly for his sister is…different. He has had to deal with lots if ups and downs so is a bit more worldly than his age suggests. I think he is growing beautifully. He is a caring friend. He is witty and funny. He is terrific at reaching things on high shelves! And he has a sister who likes nothing better than to gaze at him adoringly. The timer on his childhood has buzzed {l o u d l y} and will continue to emit crazy odd beeps on days such as this but I think he is ready…even if his mum is not.

I because Cerebral Palsy

On Sunday missy and I met a curious little dude at the market. His mum gently suggested he say hi. He was quite shy so my girl used her communication book to ask his name and tell him hers. He asked his mum why she’s in a wheelchair. The lovely mum began to explain but she wanted to use her book again. It was the first time I have ever seen her explain her own diagnosis….my voice may have wavered as I said the words on her behalf…”I because cerebral palsy.” The mum (who I now have a mummy crush on) took the opportunity to relate missy’s words to the para-olympics they had been watching at home. Meanwhile his baby brother and my baby-adoring girl made eyes and had a little chat.

 I had seen the little man looking and took a sharp breath in expecting past experiences….but his mum turned it around naturally and gently. She made it ok for him to ask questions and answered them all. She encouraged him to interact and check out missy’s communication book but didn’t insist. Parents often look awkward when their kids stare and I get that. It is not always easy to know what to do and is a rare thing for a parent to ace it like this lovely mum did. A simple smile would have sufficed but this chat was so much more.

It reminded me of another occasion. A time when a child looked at and spoke about mine. It was so very different. I was shocked by what came From his mouth . There have been numerous occasions in between. Pointing. Staring. Swivel-on-the-spot-mouth-gaping. And a gorgeous girl who simply wanted to tell missy they had the same dolly. On Sunday we met a mum who made it normal for her son to be curious. And my girl….she shone. She took the opportunity to speak for herself, about herself.  At what the girl calls “country market” we were reminded that there are good people out there…really good ones. And for that we are grateful.

Round and round

This roundabout is dizzying. Every now and then I hop off for a while. But when the time comes to get back on, the memory of previous nausea-inducing rides is strong. The mind hopes “all will be fine” while the stomach churns. Sometimes the fear of being thrown off takes over and panic rises. Today was a sometimes.

The mornings are the worst for me. When the sky is still sleepy my mind wanders to plans for the day ahead. At first a few nervous tears snuck out. Soon breath would not fill my lings. Panic is ugly. The amygdala takes over and the only way through is to talk it down. It will be ok. She will be fine. It will go well. It will be ok; she will be fine; it will go well. All will be ok, she will be fine because it will go well. Breathe.

It is ok. She was super brave…clearly more than me. And it did go well. But, even thirteen years down the track, the ride to get to ok makes me sick. The procedure today was relatively minor. But last time this same ride was too much, too fast and too scary and that is hard to forget. Tomorrow I think we shall share a quiet day.

 

I dance

The girl doesn’t have much control over her life. Many choices, particularly medical ones, have necessitous outcomes. So while she always has things explained to her and has the opportunity for input she can’t always have the final say. I aim to offer her communication book during any appointment. This is both to give her the chance to comment and to remind medicos that her voice is important. At last weeks pre-botox appointment I did just that. My girl grinned as she navigated her book to say her piece. Her words? “I dance.”

Tears welled as I looked at the proud, determined kid before me. Dance classes have become more important to her than I could have anticipated. They are fun…and so much more. She is motivated to make her body work. To open scrunched hands. To lift uncooperative arms. To coordinate moving her legs in her wheelchair as instructed by her teacher. But, clearly, she wants more.

The girl can see that Botox treatment gives her a chance to improve her movement. She recognises that the medicine that will make her arms and legs less stiff can do more than enable her to be dressed more easily or assist with other aims we have for her. It can help her achieve her own goals. It can help her to dance.

 

 

 

 

 

This seems a fitting quote for our determined girl……….

“Life isn’t about waiting for the storm to pass…It’s about learning to dance in the rain.”
Vivian Greene

Heavy Stuff

Holidays are fun, right? Well they are supposed to be. I enjoy spending time with my children. Really. It’s just…the stuff. That which still needs to be done (These people need food. Every. Single. Day. And the washing. Don’t get me started.). And that which can’t easily be done. That is what is messing with my head today.

Last week the girl was pretty sick but we did manage a couple of afternoon outings once her coughing had settled. I have tried to make fun and take the focus away from a fortnight almost sans help. With success, I think. The issue seems to be that I haven’t learnt from my mistakes. I continue to look at Facebook.

Happy snaps from all over the world greet me daily. Which is great for the snappers. For me, today, it feels heavy. The weight of the stuff we can’t easily do as a family is making me sad. It may sound ridiculous considering we adventured with another wheelchair wielding family on the weekend. How many wheelies can say they bumped along track in a four wheel drive looking for snow?

We have good times. Fun. Joyous times. We push the boundaries of expectations for this special kid. Even then I need to consider phone range and charging equipment and measuring meds and timing feeds and temperature management…you get the picture. {{sigh}} Tomorrow my big girl wants to see a movie and have coffee. So I shall go now, sleep off the heaviness and wake to a smiling girl. Tomorrow I will be ready to enjoy the stuff we can do.

Mum’s the word

Tomorrow is Mother’s Day here in Australia. It is supposed to be a day of flowers and chocolates…hand made cards and mushy cuddles. A day to celebrate and show appreciation (or a bah humbug day for some 😉 ). But, as with other occasions, it can also emphasise what is missing. Many will mourn their children, their mothers or motherhood that could not be. For many it will be just another day. There is no leave from parenting tiny people and kids with additional needs.

So tomorrow go gently. Embrace the love around you. And I hope you have reason to smile.